Embracing self-advocacy

October 20, 2021

Becoming an empowered patient is an important part of health care. However, managing a care team while living with a rare condition may require some skill, and a toolkit may be helpful in navigating care.

The dangers and challenges of misinformation

July 30, 2021

From the desk of J D Faccinetti, co-founder, an op-ed – The whole thing about misinformation is that it is dangerous. More specifically, people can get hurt, needlessly sick, and die following internet quacks’ advice. Since

It’s time to fix this mess, but first we have to understand it

May 17, 2021

Pituitary World News has undertaken an initiative to understand and share the complicated issues related to access to medications and costs so pituitary patients can join us in advocating for better healthcare systems. In that mesh of confusion, we find insurance companies, orphan drug manufacturers, specialty pharmacies, pharmacy benefit managers, also known as PBM’s, prescribers, and others that add to the costs and complicate access. The issues get even murkier when considering patients on Medicare, Medicaid, pricing models, and copay requirements.

A muse for Rare Disease Day

February 28, 2021

From Jorge D Faccinetti, co-founder – Today is Rare Disease day. It is encouraging and gratifying to see the many organizations that participate by acknowledging the day. Thank you for mentioning Rare Disease Day in